Fibromyalgia (part 2)

LameWolf

Unity wrote: »

I've had a similar reaction to strawbs in the past so I'm going to give them up and see if it makes a difference. Typical - you never get a reaction to broccoli or potatoes, it always has to be something you like :mad:.

Awww, poor Unity. I'd hate to have to give up strawberries.

bigzippy

Hi guys, you've all posted too much for me to reply to really...or should I say I can't remember enough of it to comment on! lol. I tried to come on last night but it kept saying the forums were down cos of a power failure..?

I've gotta take mil2b to hospital this arvo. They want to do a ureteroscopy on her to try and find out why she keeps getting these "rare" abcesses, and she's got her pre-op today and the procedure should be tomorrow - they're keeping her in tonight (not sure whether it's because of her diabetes and the restrictive diet?) but she's freaking out about having a general anaesthetic (she basically thinks she won't survive it) so this may be a long 24-36hrs...:rolleyes:

bigzippy

P.s. nice vid lw. And nice shoes

LameWolf

bigzippy wrote: »

P.s. nice vid lw. And nice shoes

:p:p Cheers!

Hope your MIL2B gets on OK, btw.

snoozer

Hi all,

Hope you don't mind me joining in but I am fairly sure I suffer from fibromyalgia.

I've had an underactive thyroid for about 25 years (23 years diagnosed but of course there's the two years of toing and froing to the GP before getting the diagnosis).

About 15 years ago I began to suffer from pains all over, extreme tiredness, very painful spots on my ribs, my face etc and a multitude of other symptoms.

I was referred to a professor in Cambridge who told me he was fairly sure I had a rare type of vasculitis (his speciality) and set me up for tests and eventual treatment. He then died two weeks later and his registrar who took over decided I didn't have vasculitis, I had something wrong with my kidneys (her speciality) and/or a virus - because over the months I saw her I began to go into a period of wellness. After 18months I begged her to discharge me because I felt that I was getting nowhere and she didn't take me seriously at all.

Since then I've lived with whatever I've got - sometimes feeling ok, most times not and having read up on all sorts of associated conditions I think the one that fits closest is Fibromyalgia. Unless I start to really deteriorate though I've decided I've had enough of hospitals and will try to manage myself with painkillers, resting etc.

It's hard in that even though my DH is very good I don't think he really understands how tired and sore I sometimes feel. I say to him "I have to lie down now, or I'm going to literally collapse" and can see he can't quite believe me - do any of you ever get that feeling?

I'm feeling quite down at the moment because I've got labyrinthitis which is making me dizzy a lot of the time. I try to hide a lot of things because I can see people thinking- How many things can this woman have wrong with her, without realising that a lot of them are linked.

Sorry for the long winded post. I hope you'll accept me as a member even though it's not certain that I have fibromyalgia.

purplecatlover

snoozer wrote: »

Sorry for the long winded post. I hope you'll accept me as a member even though it's not certain that I have fibromyalgia.

course our welcome, despite the title fibro is not a condition for membership, they're such a nice bunch of people here they even let those of us without it in. welcome.

bz hope the hospital goes ok and mil gets settled in.

sue good luck (why does that always sound so wrong..you know what i mean though i hope) visiting your dad.

unity hope you manage a nap or sleep better tonight.

kass how is the moving going now?

lw that vid was great, thank you.

bigzippy

snoozer half the posters on here don't have (diagnosed at any rate) fibromylagia...and some of us have fibro and a multitude of other things. Of course you're more than welcome!

The best advice I can give you right now is to read The Spoons Theory. I found it last year (or maybe the one before?) and us guys on here are all familiar with it, which is why we'll commonly refer to having no spoons (it'll make sense when you read it). If you find it helpful/fits then I would recommend getting your husband to read it, and maybe your family/friends?

suep's got a link for fibrouk, but I can't remember it....hang on...I think this is it...http://www.ukfibromyalgia.com/

I have to say tho, although I know why you might've lost faith in the medical profession through the years, I do think that you should consult your GP about your concerns. He/she should be able to either diagnose/investigate/refute it or refer you to someone who can. There are various medications that can be prescribed for someone with fibro/related symptoms and they could help you more than you currently think they could.

HTH

LameWolf

Welcome to the madhouse Snoozer, You don't *have* to actually have fibro to be at home here - I have lupus, for instance, and others here have other stuff going on. The point is to have a laugh when we can and help each other through the bad bits.

I understand perfectly the "I have to go and lie down NOW" bit; I get that a lot with lupus.

I'm a little concerned about you not seeing anyone - how long ago did you see the Prof in Cambridge? Might be worth a trip to the GP for a further referral? Not trying to tell you what to do, but I do know that it took a move to another area (and therefore a different rheumy) for me to get properly diagnosed.

Anyway - join in whenever you like; and I hope that today is a good day for you.

bigzippy

Thanks pcl and lw. I've just heard from mil2b and she'd rung the hospital (as requested) an hour before she was due to be there...and they have no bed for her! And doubt they will have tonight! Ah the joys of the No Hope Service.:rolleyes:

I also heard from my SIL and my (16yr old) niece is currently in theatre to try and sort out her endometriosis.:undecided

Oh and the freak water chuck-downs is interfering with my sky reception.:cool: Before the government backed a complete transferal to digital tele, maybe they should've thought about what happens when storms roll in....:rolleyes:

LameWolf

Oh, flippin' 'eck, BZ just what the poor woman needs - she's stressed out as it is, and now they're messing her about. *throws up hands in exasperation at NHS*

Paws crossed for your niece - that can't be fun, and only 16 yrs old as well.